Instead of using a saline solution on the Amrex electrodes would it be alright to use conductive gel.

Hi,

I could not resist updating a post posted on Sept 28, 2012. In that post
I asked if other users had experience similar to my daughters in regard to
their use of TDCS.

Briefy, she noticed the burning pain would appear to move away from the
area where she was most aware of the pain. In this case along a surgical
incision site. She would have the experience of having that pain move an
inch or so away from the incisison site. As a result the sensetation of pain
would not be felt where the incision point was but would be felt in the other
area. That said, it should be understood occcurance was not a permament
condition, rather the case over time is the burning pain would again be
felt at the incision point but not in the other area.

Long story short I called Doc Fugedy and as it turns out it is not a bad
thing rather a good thing. Without a medical background it is difficult for
me to put in words but I will try. As I understand it she is not experiencing
new pain, rather the case she had the pain both at the incision point and
extending beyond that point. The protocal she was using was S-1 over
the ear. ( Note this is the sensing portion of the brain) Suffice it to say
the bottom line she was indeed affecting her pain level. I guess, and please
understand these are my thoughts at least perception wise she moved the
pain, the pain was gone in that area. ( That is the good thing, in fact a
great thing because it shows something is happening.

So where do we go from here? Not sure, but would like to say
in regard to TDCS. For those who try TDCS, you may or may not be a
responder, you may be a responder to some benefits and not others. Every
one's bodies are so different but it is so important to experiment and to
pay attention to details.

So happy to see we haven't lost touch. It just seemed like no one was using tDCS so we had no info to respond to. I'm happy to see people are still using and hoping for some sort of improvement. I live alone and take care of my grandson only 2 days a week so if there were any noticeable changes I was not aware of there is no one to tell me there is a change. I still to this day do not notice any improvement. Last response with Dr Fugedy was 2 wks ago and he's waiting for something from WHEREVER? lol to this because I've heard 2 diff locations and both involve Europe. So take it with a grain of salt. Which is what I did. If I ever hear from him again I'll be surprised. Take a lesson.
When I use the unit I have 2 rubber head bands one for each pad specially when trying to do this by yourself with only 2 hands it is difficult. One band holds over the ear and one holds over the eye then I use a 3" ace bandage that I cut with velcro at one end. It works perfect to hold it all together once the pads are in place. So right now I'm not doing anything since no other protocol is available at this point. So you just hang in limbo. So to anyone else using tDCS please be happy with any help it may be to you. To those of us it has not helped we'll just keep praying for some other treatment to come along that we can put our hopes into. Hang in there everyone and always know we are all pulling for some each other. Much Luv to All.

I'm sorry to hear that you are not having success Hampster and that you are frustrated with Dr. Fugedy. How many protocols have you tried so far? I think of you and Deb often and I wish that you both had gotten some relief with tdcs. While most of my relief has not been with the pain portion (though the reduction in sensitivity in my hands and arms is something I am SO grateful for), I can confidently say that the other things which tdcs has helped with have contributed greatly to better quality of life and make it so much eaiser for me to get through the day to day stuff. I will keep praying that you and deb both find something that can help you.

Well...tomorrow is the big day...I will be on my way to Disney World in 24 hours. At this time tomorrow I will be on an airplane headed to Orlando. I am still very anxious about dealing with the airport and the plane ride...but arriving at the airport 2 hours before my flight should give me all the time I need to get through it all without too much stress. Excited and anxious...it's quite the combination. I asked for today off work and the request was granted so I have all day to double check to make sure I have all my meds, my "flare kit", tens unit, cane, proper clothing, etc. I put in 72 hours of work from Saturday to Thursday...and I am so tired and hurting...I think I will need the entire day to get moving. Good news though...weather is planned to be highs in the mid 80s, lows in the upper 60s, and no rain for our entire trip. That should be a wonderful change from the temps in the 30s-50s here in chicago.

Wish me luck! I'll report back on how everything goes when I get back.

Hi,

The trip to disney world sounds fun. Be safe, you will have to share when you
get back home.

Hi. From what I understood meeting with Dr. Fugedy, conductive gels appear to be frowned upon as a little too conductive. Specifically the current is calibrated on the assumption that it will pass through either ("iontophoroetic") drug delivery pads, or sponges soaked in either plain water or saline. In other words, it is assumed there is a certain amount of resistance in the circuit and if you take it away by using conductive gels, as I did once in conjunction with the use of mere EEG electrodes, which a local physician [not at USC] had provided to me - well before the first time I saw Dr. Fugedy - I was able to (1) completely drain the charge out of a 12 volt battery in a second or two, (2) experience a momentary cascade/river of sparks in my head as phosphorous was harmlessly released from my retinas. and (3) become immediately aware of the smell of my own burning skin, immediately under the once-white-but-by-then-golden-brown electrodes.

Finally, and for what it's worth, Dr. Fugedy explained that plain water is becoming preferred to saline, where, for some obscure reason, a saline soaked sponge delivers most of its power around the periphery of its square border, while the sponge soaked in plain water evenly delivers its current over the surface area of the sponge as a whole. (Go figure.)

Hope this is useful.

Mike

I'm sure this trip is well planned and well deserved. Have fun and forget all about RSD as if it did not exist. So happy for you. Much luv,

Thanks so much for the well wishes everyone!

As expected...the airport/flying was the most trying part of the vacation for me because there is only so much you can do when dealing with the airport, TSA, and the plane. Both O'Hare and MCO had their issues for me...some on departure, some on arrival. At both, however, I got yelled at by the TSA employee for not walking fast enough through the security area. At least the guy in Orlando apologized after I told him I was going as fast as i could and that my walker was on the other side...said he didn't realize. The woman at O'Hare however gave me a hard time after having personally giving me a hard time about my walker (made me put it up on the xray belt and then made me go back to ensure it fit through...it did). Whatever...minor annoyance that was over quickly.

The plane ride itself was (as expected) rough on me but not as bad as it could have been. I did the pre-boarding. This went better on the return flight as they actually boarded me first along with one other person in a wheelchair and helped me with my carry on. On the first flight they just let me board with the first class passengers and so I had to go through all of them (who were much faster getting on than me...several passing me in the tunnel to get onto the plane). I also had to take care of my own bag and put it in the overhead bin...all of which was difficult while trying to use a cane and get to my seat which was pretty far back. Of course...after landing I had the reverse situations. My first flight the attendent INSISTED on taking my bag for me out of the plane until I got to my walker...very nice woman. On the return flight the attendents were busy talking to one another so i was trying to get my bag out of the overhead bin before any of them noticed me. Then when they did, the woman who got it out asked if I needed help getting it out of the plane and when I said thank you, that would be great, she told me she couldn't because she had her own bag. Then I guess she noticed the cane and said she would figure it out some how. Oh well...such is life...in the end it all worked out fine and was much better than it could have been.

Disney itself was just fine. I've been many times and so knew which rides I absolutely NEEDED to skip and which ones were worth TRYING. Thankfully I only had one really bad flare the entire trip when we were at Universal for their Halloween Horror Nights event. I had ridden something earlier and it was fine but the second time I got a terrible flare in my left arm. It was the last thing we did before leaving...but it was a LONG walk to the car and since I couldn't use my left arm to push off on the walker, my ankle was in a flare by the time we got to the car and the pain in my arm had travelled from my hand to my shoulder. I was a mess. But since using tDCS (well...a couple of months in anyway) my flares rarely last longer than a day. By the next morning my hand/arm was fine and my ankle was tolerable...just took it easy...spent the day mostly eating.

Disney and Universal were both wonderful to me with the walker. I only ran into one or two minor issues with accessibility and I think that was just due to the people being new (seemed like a lot of people were going through training while we were there). Honestly...the biggest issue I encountered that I hadn't expected was using the walker on some of the uneven pavement/bricks at various parks. It looks awesome and all but the way it made the walker vibrate was painful. Once it happened a couple of times I just sought different routes (along sidewalks, through stores, etc) to avoid these areas.

Being in the large crowds was something I was afraid of but mostly it worked out. People generally gave me space because of the walker and I only had a could of instances where people walked into it or bumped it during the whole week. Having the seat (and a padded on at that) with me at all times was a godsend in some of the lines as well...not to mention the little basket to hold my drinks or whatever so I didn't need to carry a bag with me. Because of the walker, I didn't need to try and explain my condition or needs to anyone at the parks or anywhere else...it made my invisible condition visible at least to some extent.

Anyway...overall a very good trip and I look forward to my next one. Feels good to know that I can do it. I cannot forget about my condition, or ignore it and my physical needs, but so long as you go prepared and with a plan (and expectations set at the appropriate level) then it's all good. I went in knowing what my limits were and prepared for the possibility that I wouldn't be able to do everything I wanted. it was hard to see some of my favorite rides and to know I couldn't do them...but I knew it wasn't worth it to make myself miserable and cause myself so much physical pain...just have to live with fond memories of those things and be happy with all the other things I can do.

I don't think I could have done this before tDCS...that one flare would have likely put me out for the whole trip but since tDCS my flare periods have gone down substantially...lasting only a day instead of a week (assuming I treat them appropriately of course).

So...hoping for another trip in April that will go even better with my first experience under my belt. thanks again everyone for your well wishes and advice!

For those who have the Activa Dose 2 what settings are you using for tdcs? I see on the device where it says Dose: mA x min, Time: min: sec, and Current: mA. I am thinking that the Current needs to be set at 2mA and the time to 20 minutes but what does the Dose: mA x min need to be set at? Would it be 40.0 mA since I am doing 2mA for 20 minutes?

Yes...the total dose would be 40.